Humira Club Support Group
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My insurance requires I get the Humira from a specialty pharmacy. They deliver it via UPS to my home.
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I get my Humira the same as DougUte, delivered from Axium,(a speciality pharmacy) to my door. I've done my second loading dose and will start the bi-weekly routine on Friday the 28th. It started working right away for me. Good luck Momof2EW on the Remicade. It worked for 3 years on me. Everybody is so different.
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That is really interesting. Yesterday the day before *** day - I had real bad crohns pains in the area where my ulcers were in the small bowel. I ended up taking two tramal to ease the pain.
I phoned my Pharmacist today and he went over to the docs to grab my script and fill it so I could pick up the humira on my way home after work, which I did.
Does anyone else get crohns pains in their flare site just before the next *** is due?
Are you doing 40mg/week or 80mg all at once?
Hi Aura!! How long have you been on Humira? When last we talked, I think you were still on metho.
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Hey Dexk - long time no chat - totally my bad
I have been on humira since May this year. I had a bad flare with 9 ulcers in my small bowel, had to quit work - but have been healing well on humira nearly gone in to remission - i think. I have got a job again and we have moved back to wellington. I am also on Aza as well.
Merry Christmas hun - great to see you again :biggrin:
I have been on humira since May this year. I had a bad flare with 9 ulcers in my small bowel, had to quit work - but have been healing well on humira nearly gone in to remission - i think. I have got a job again and we have moved back to wellington. I am also on Aza as well.
Merry Christmas hun - great to see you again :biggrin:
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How many of you out there find Humira somewhat beneficial but still have recourse to prednisone either as a low dose maintenance or as an occasional short treatment to cover flares (or for joint pains etc). Humira 40 per week helps me but I need th pred "silver bullets" from time to time to feel normal. Without pred I would have had Christmas in bed with my head under the pillow with a flare. Pred saved me from that but every time I use it I feel like I have mortgaged a bit of my future.
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Yep I've had to use pred for a couple of months twice in the time I've been on Humira. The last time it probably saved me from having to give up Humira (was coming up to re-assessment); thankfully since then I've felt progressively better and keeping weight on for the first time in ages. It took me ages to get back into a decent sleeping routine though!
Yeah, I doubt that!! Anyway, good to hear you are doing so well!! I suspect a well Aura is somewhat dangerous though!:wink:
My son recently had a five week taper whilst on Humira. We are still awaiting blood results from last week to determine if it was enough. It did solve any outward problems he had prior though.
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I am still on low dose pred with the humira - sometimes if I get bad then I may have a bigger dose of pred.
I went to watch the cricket yesterday in the rain and got sun burnt - first time I have been so sensitive with the Humira and Aza - I must remember to always put cream on before I go outside.
Today is an inside day for me :ybatty:
Hey Dexky - ssshhhh you are probably right - at the moment I am just hoping with all my hope that I can stay well for a bit. It was not good for me to be off work for so long - I get frustrated as my mind wants to do so much and my body is just not willing :thumbdown:
I went to watch the cricket yesterday in the rain and got sun burnt - first time I have been so sensitive with the Humira and Aza - I must remember to always put cream on before I go outside.
Today is an inside day for me :ybatty:
Hey Dexky - ssshhhh you are probably right - at the moment I am just hoping with all my hope that I can stay well for a bit. It was not good for me to be off work for so long - I get frustrated as my mind wants to do so much and my body is just not willing :thumbdown:
Hey everyone! New member here. Took my loading dose (4 shots, 3 in gut/1 in thigh--holy hell it burned) 16 days ago. Just took my second dose (80mg). After that, 40mg every two weeks.
How long does it typically take to notice some results? I've been on a taper dose of pred. for a few weeks. Now that I am off the 40mg of that a day, I've started to flare. Really hoping the Humira works.
How long does it typically take to notice some results? I've been on a taper dose of pred. for a few weeks. Now that I am off the 40mg of that a day, I've started to flare. Really hoping the Humira works.
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They say humira takes 8 -12 weeks. But it can differ.
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My Humira just took off right away. I did the 4&2 loading doses and was going to start the single shot tomorrow. Axium calls at 2 PM MST from the east coast, leaves a call us
message. My insurance company all of sudden wants me to get it from another pharmacy. Everything is closed now. I want my HUMIRA tomorrow like I was told.Good luck Kilroy, hope it all starts for you. Trying to hold a job with this " Hope I dont crap my britches disease", is sure a pain in the ass.
message. My insurance company all of sudden wants me to get it from another pharmacy. Everything is closed now. I want my HUMIRA tomorrow like I was told.Good luck Kilroy, hope it all starts for you. Trying to hold a job with this " Hope I dont crap my britches disease", is sure a pain in the ass.
Hi there! Welcome to the forum!!
Why don't you pop over to the My Story section and tell us a bit about yourself? We would love to meet you!
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Hi all,
So far I have had my loading doses of Humira on Oct 5th (4 pens) and October 18th (2 pens), plus another 5 pens (one per fortnight), and have one pen left. I understand that I will be assessed after the next pen to see if Medicare will continue to fund Humira for me.
For a while now (about 3 - 4 weeks) my symptoms overall have been reducing or becoming more manageable, and I have generally been feeling somewhat better.
The last couple of pens were taken at a time when I was already flaring and had moved on to a "mush" diet, eating only soft, easily digestible foods combined with the use of Modulen and as a supplement.
The gut pain I'm still sometimes getting seems to be a lot easier to deal with than the internal gut pain which previously often had me up in agony during the night. These pains feel more like a pain on the outside of the stomach (just under the skin, like I get after my pen injections), and they can usually be treated with a heat pack or just by holding my tummy carefully and masaging gently. Consequenty the number of Panadol Osteo tablets I am taking has dropped dramaticaly.
I'm looking for advice because I'm a little confused, I am not sure whether the improvements I am feeling are due to the Humira, or due to my new diet regime (or maybe both!). Any ideas?
So far I have had my loading doses of Humira on Oct 5th (4 pens) and October 18th (2 pens), plus another 5 pens (one per fortnight), and have one pen left. I understand that I will be assessed after the next pen to see if Medicare will continue to fund Humira for me.
For a while now (about 3 - 4 weeks) my symptoms overall have been reducing or becoming more manageable, and I have generally been feeling somewhat better.
The last couple of pens were taken at a time when I was already flaring and had moved on to a "mush" diet, eating only soft, easily digestible foods combined with the use of Modulen and as a supplement.
The gut pain I'm still sometimes getting seems to be a lot easier to deal with than the internal gut pain which previously often had me up in agony during the night. These pains feel more like a pain on the outside of the stomach (just under the skin, like I get after my pen injections), and they can usually be treated with a heat pack or just by holding my tummy carefully and masaging gently. Consequenty the number of Panadol Osteo tablets I am taking has dropped dramaticaly.
I'm looking for advice because I'm a little confused, I am not sure whether the improvements I am feeling are due to the Humira, or due to my new diet regime (or maybe both!). Any ideas?
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Hi Paul Cronk, I've heard about that & remember the success rate was IIRC 98%. Sadly though the other 2% died.
Its certainly an extreme way of dealing with Crohns.
Hey everyone - i'm new to the site and group but have been diagnosed for 10 years - spent 8 with no treatment and suffered. have been on humira for 2 years with no symptoms after the first 4 jabs and in the last 6 weeks or so have noticed symptoms again. too scared to go back to specialist in case they say it's stopped working - but will make appointments after the new year like i know i should.
don't know anyone else in South Africa on humira but obviously there are others. i'm not on any other treatments- should i be? my specialist doesn't think vitamins etc are necessary really - other opinions. i'm generally well but soooo tired all the time. advise? loving being able to contact people who understand what my life is like.
don't know anyone else in South Africa on humira but obviously there are others. i'm not on any other treatments- should i be? my specialist doesn't think vitamins etc are necessary really - other opinions. i'm generally well but soooo tired all the time. advise? loving being able to contact people who understand what my life is like.
MCD - I WOULD SAY vitamins are necessary as part of the issue is absorption in your digestive tract. I have taken Humira for 2+ years and started to notice weight loss. What I'm saying is that there is probably something else working. Maybe you are still having some inflammation and need to manage that as well. Talk to your specialist.
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Hey guys,
I've done my loading doses and just did me first shot at home.
The thing is I feel better for a few days after my shot, but the week between the two shots the cramps come back. Today my CRP was 147,8 before the Humira. I'm starting to get really worried, what do you guys think?
I've done my loading doses and just did me first shot at home.
The thing is I feel better for a few days after my shot, but the week between the two shots the cramps come back. Today my CRP was 147,8 before the Humira. I'm starting to get really worried, what do you guys think?
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I I have been on Humira for 18 months. Over the first 12 months my CRP, which was 137 when I started Humira, dropped steadily.My last CRP was 2. My doc told me the goal was to get it under 20. It works, but it takes some time. I had drop off in the second week at first also, but as the med built up in my system I no longer have drop offs on the second week.
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Hi, sounds like it will be best to get it checked out with your specialist - just in case there is inflammation elsewhere, just a possibility.
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So you believe that after six months with some relief but not enough the drug may still need time to show the full effect? Patience is hard but I can do it if the is reasonable hope.
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I didn't realize that. I agree with Kirsty. You might have something else going on, or maybe Humira isn't working for you.Get it checked out.
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Paul, If you have improved while on Humira, but not as much as expected I would still give it some time.You may also look at a combination with something else.I also am on Budesonide. You might want to talk to your doc about it.
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Thanks. I would have tried Budenisode which is supposed to be safer than Prednisone. Trouble is I need Prednisone periodically to relieve arthritic pain and I save that for all over bad times. Therefore another drug is probably too much. I also thought about low dose Prednisone with the Humira but the degree of immunosuppression worries me. As always you have to make the least bad choice!
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I understand that. Good Luck.
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You discover some interesting things. Started taking a drug for joint pain called Ixprim, which contains Paracetamol and Tramadol (normally I just take Paracetamol but sometimes when it is real bad...). Anyway after two days my Crohn's symptoms have gone on vacation and it is either coincidence or the Tramadol, which is a mild opiate.
Since I recently came off any other "mother's little helpers" I am not worried about the side effects or dependency on this drug so I am pretty comfortable with it if it continues to help.
Anybody else discovered Humira/Tramdol in combo?
Since I recently came off any other "mother's little helpers" I am not worried about the side effects or dependency on this drug so I am pretty comfortable with it if it continues to help.
Anybody else discovered Humira/Tramdol in combo?
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Hello everyone,
I wanted to ask a quick question....I was on infliximab for 7 years and it was amazing until I built up antibodies to it. Now on Humira which seems to be working well but I am so so worried that I will eventually build up antibodies to it also. As I have exhausted most other medical options it would be likely that if the Humira fails surgery would be my only option. I was wondering if anyone else who has been on infliximab and built up antibodies have found that they have been able to stay on Humira for a longtime without the same thing happening? Many thanks
I wanted to ask a quick question....I was on infliximab for 7 years and it was amazing until I built up antibodies to it. Now on Humira which seems to be working well but I am so so worried that I will eventually build up antibodies to it also. As I have exhausted most other medical options it would be likely that if the Humira fails surgery would be my only option. I was wondering if anyone else who has been on infliximab and built up antibodies have found that they have been able to stay on Humira for a longtime without the same thing happening? Many thanks
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Hi Paul,
I have found that codeine (also an opiate) helps my crohns symptoms as not only does it relieve my pain but it slows down my digestive transit so I go to the loo less. Im prescribed high strength codeine which i take regularly for diarrhea control. Took tramadol after surgery a year ago and it's much the same as codeine, just stronger
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That's the main reason why I was put on mtx with humira. Methotrexate helps with that as well as increases the effect of humira. Might want to run it by your doctors, as it might not be right for you. I had a lot done even then I saw some very reputable doctors here in the states. Just be warned mtx in itself is serious, add humira and you get rocket fuel instead of normal gas. It's knocked me out a couple of times at first.
Here is another explanation from NIH: Patients who have had reactions to Infliximab may not have a reaction to Humira, given the latter anti-TNF agent is fully humanized. The reaction is thought to be due to antibody response to the the anti-biologic agent being used. In this case the addition of methotrexate is being used more so for the curtailing of the antibody response in conjunction with its anti-inflammatory effects.
So what they say is your body's natural defense against humira is broken down with the immune system (tnf). Thus making humira more effective and powerful...hope this helps.
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Thanks Scaryman,
I'm also on methotrexate subcutaneously but it is making my hair fall out so going to ask to be switched to oral methotrexate (never had the problem with hair loss when I was on methotrexate tablets before). It is good to know that the methotrexate could stop me getting antibodies to the Humira, my gastro had mentioned that the Metho increased the effects of the Humira but not the part about the Metho reducing an antibody response. Thanks
I'm also on methotrexate subcutaneously but it is making my hair fall out so going to ask to be switched to oral methotrexate (never had the problem with hair loss when I was on methotrexate tablets before). It is good to know that the methotrexate could stop me getting antibodies to the Humira, my gastro had mentioned that the Metho increased the effects of the Humira but not the part about the Metho reducing an antibody response. Thanks
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Thanks Scaryman,
I'm also on methotrexate subcutaneously but it is making my hair fall out so going to ask to be switched to oral methotrexate (never had the problem with hair loss when I was on methotrexate tablets before). It is good to know that the methotrexate could stop me getting antibodies to the Humira, my gastro had mentioned that the Metho increased the effects of the Humira but not the part about the Metho reducing an antibody response. Thanks
No problem, that information came from some of the immunologist geeks here in the United States National Health Institute. They know humira very well.:thumright:
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Hey Fellow Crohnies, Hope everyone is doing well. Im in need of a bit of advice,my Consultant has decided to start me on HUMIRA and also recommends i carry on taking mercaptopurine (75mg) and prednisolone (30mg). does anyone know if its safe to take mercaptopurine with HUMIRA as on the humira website its advices caution?
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Never heard of humira with Mercaptopurine. But that won't mean anything, why not methotrexate?
Dukeis
Dynastic Overlord
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I was on both Humira and 6 mercaptopurine together at one time. It worked great until my white count drop to low and they took me off the 6 MP at that point. It worked better then methotrexate for me. Both these drugs are used to help you not build anti-bodies is what I was told.
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My GI says its not good to take humira with prednisolone, told me to taper off the pred (which took me ages!)
Don't know anything about mercaptopurine, sorry.
Gra
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Hi there I'm currently on Azathiprine 125mg and have been for the past 6 years, have had a coup,e of flare up in the last couple of months, which I put down to having a miscarriage and stress and upset. My doctor has mentioned the possibility of starting me on Humira but I am very unsure. I have not finished having my family yet so don't want to take anything that I can't take during pregnancy ( I have a very healthy, happy 2 year old and I took Azathioprine the whole pregnancy with no problems at all). I will discuss all this with dr when I see him, wass just wondering if anyone on here had any experiences with Humira and pregnancy? Did any one get pregnant and have to stop taking it? Etc. this is the first couple of flare ups in 6 years so I would much rather stick with the Aza and see how it goes
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I have terrible arthritis that comes with Crohn's-enteropathic arthritis. Humira didn't work for me but Remicade takes care of both the bowel and the joint issues for me. Entocort can be used short term and is nowhere near as bad for you as straight prednisone. I understand the extra level of suppression in the immune system is worrisome but it doesn't have to be long term.
I really like bromelain, which is a natural substance from pinapple to relieve arthritis flares too-if they are relatively minor. Hope this helps!
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Hi im Alison i was diagnosed with crohns disease of the ielum and colon in 1999. I had a rough few years on every tablet going but eventually went away on its own until 2010. I was on no tablets whatsoever. In 2010 i was diagnosed with iritis. I was told by my eye doctor that it was linked to the crohns disease. My crohns didnt bother me until 201:ylol2:2 when i had a bad flare up in which i am still on budesonide now. My GI told me to have gastosomy, colonoscopy and mri scan . The tests shown superficial ulceration of the ielum. I was put on 6mp as azathioprine i am allergic to. I am also allergic to 6mp. In the next couple of weeks I have got to go onto humira. I am just waiting for my liver function to go back to normal then i can start treatment. I just wondered about other peoples views on humira as i have heard a lot of bad stuff.
Thanks
Alison
Thanks
Alison
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My biggest issue with humira in extreme tiredness after injections. I'm not sure if it is going to keep flares at bay yet as I'm having issues tapering from 40mg of prednesone. Sorry that doesn't help.
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Hi there! I took humira while pregnant, it is safe. It's a pregnancy cat. B drug. I had and still have a very healthy baby girl!
Thank you very much! I will definitely discuss it with my doctor anyway but that is a relief
P.s. you little girl is very cute
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Hi Alison,
Humira has been brilliant for me. I had to switch to it from infliximab and I have have only noticed one side effect- when I take it a couple of days after my methotrexate the two drugs combined give me a bit of a brain fog, otherwise I have only good things to say about Humira. It has helped me get on top of my aggressive crohns
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Hi thanks for all the replies. I feel a bit more happy about humira now. Hopefully humira will work for me. Ive been told if humira dont work and the ielum becomes more damaged then an operation might be needed. I am really lucky that ive never had a operation since being diagnosed in 1999.
Alison
Alison
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Allison,I was very resistant to going onto humira, but after reading lots of other peoples stories I decided that it seems to help many people, and not too many have problems with it. I have been taking it (via pen, every 2 weeks) for 12 weeks now, it only just started to work for me in last two weeks, and is making a big difference. Like, I've not had too take any pain meds for 10 days straight, I am regularly having"normal" poops, and not many loose ones. Most nights I an sleeping right through the night, previously was up with gut pain nearly every night. Certainly still not perfect, but things seem to be going in the right direction for a change.
Also I have found the injection is not as painful as some people claim, I always inject into tummy area, it stings like a bee but the pain only lasts about a minute. Plus I get some low level pain in the injection area for a day or two.
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Captain, who took you off it? And why?
(still new to Humira, learning about it all the time)
Gra
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I usually do my *** on a Thursday, but my GI tells me that it doesn't hurt to do it one, two or three days early or late, if circumstances require it. You could move your injection back to Sunday, then Saturday, then Friday. But clear it with your GI first.
2
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Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I will be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?
I like the term "*** day"
I like the term "*** day"
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Next time I would do it on Sunday, then Saturday, Then Friday.
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Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I wi.ll be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?
I like the term "*** day"
Michelle, most people do not get tired from it.Just a lucky few. I don't get tired every time. Even when I do I can usually function.
I hope I can avoid this, I have a hard enough time with everything going on keeping up with my extremely busy 5yo! Some days are so difficult as it is, I'm hoping humira can make it better!
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I would imagine that SOME improvement is much better than NONE. I guess it depends on what your alternatives are. Certainly for me, since the humira started to work three or four weeks ago, I am not perfect, but it's infinitely better than going back on prednisone or Imuran.
And of course, I am assuming (and hoping) that I will continue to improve from here forward.
2
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Oh, my. I am new to humira, waiting for my initial dose to come in the mail. From the last few posts I'm getting the idea that I will be worthless, needing to sleep all day the day after I inject!? Is this correct, or is it just in the beginning doses!?
Michelle, personally I find that I need to rest / sleep once or twice a day (as well as overnight) for about 30 - 60 minutes. Also, I was needing the rests before I started humira, haven't noticed that the tiredness is any worse than before.
2
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Me too I need a day rest and I cannot tell if it is just the disease or the Humira.
Looks like just in case I'll try to plan out my "*** day" (I like referring to it as that, lol) accordingly in case I need rest. Glad I read this!
However, I may be premature in thinking I'm taking Humira. I received a message from Medco pharmacy this morning that stated my insurance has approved my initial order for humira but that it was only approved from January 2013 to February 2013...... and stated that my insurance approval may change. What the heck does that mean!? This isn't a one month on then decide to do something else sorta decision here..... confused....
I just want to get on something to help. I'm currently taking prednisone (tapered to 30mg this week from previous 40mg) and imuran, which obviously isn't really working anymore.
However, I may be premature in thinking I'm taking Humira. I received a message from Medco pharmacy this morning that stated my insurance has approved my initial order for humira but that it was only approved from January 2013 to February 2013...... and stated that my insurance approval may change. What the heck does that mean!? This isn't a one month on then decide to do something else sorta decision here..... confused....
I just want to get on something to help. I'm currently taking prednisone (tapered to 30mg this week from previous 40mg) and imuran, which obviously isn't really working anymore.
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I find it very difficult to tell if the Humira is working or not. Started on 40mg every two weeks from July 2012. Seemed to make a difference at first (off Pred) but by November I needed to be upped to 40mg every week. Since then I have needed Pred several times and am now at a stage I need 20mg Pred per day to have an acceptable quality of life. But 20mg Pred without Humira should do that anyway!
I need to overcome the fear that by admitting Humira may not be working, I am running low on alternatives, and may not be prescribed it again. Maybe it will start to work better eventually, but it doesn't feel like it.
Have been told that it can happen that Remicade will work for some where Humira does not. I fear my Gastro man will simply say these things are equivalent.
Ah, what fun decisions we all have to make to get the best out of a bad deal. I guess that if I stand back objectively and say why would you continue to take an immunosupressant which isn't working, then my answer comes more clear.
I need to overcome the fear that by admitting Humira may not be working, I am running low on alternatives, and may not be prescribed it again. Maybe it will start to work better eventually, but it doesn't feel like it.
Have been told that it can happen that Remicade will work for some where Humira does not. I fear my Gastro man will simply say these things are equivalent.
Ah, what fun decisions we all have to make to get the best out of a bad deal. I guess that if I stand back objectively and say why would you continue to take an immunosupressant which isn't working, then my answer comes more clear.
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Hi i am hoping that i dont get tired when i start humira. I have two young children aged 2 and 4 that need looking after.
Alison
Alison
Dukeis
Dynastic Overlord
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I like that "*** Day"!:ylol:
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You should def. do the legs!! Tummy hurts like crazy. Apply a cold compress after injection, it helps with the pain.
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My *** Day is Tuesday!!:ylol:
I will hopefully be starting Humira soon (waiting for insurance approval) and from reading everyones posts it seems it hurts less in fatty areas so since the prednisone has made me gain weight anyway I have plenty of fat so the injections hopefully wont be so bad....lo
I was hoping to get going on my initial dose of Humira any day now, since I got word that the pharmacy was processing my prescription. However I have just put my prescription on hold with the pharmacy who advised me the charge would be around $9,000.00 and insurance shows they aren't covering any of it :eek2: First, I'm not really sure what the $9,000.00 covered but it didn't really matter as I was focused on why my insurance isn't covering it. We do have a large deductible but not that large! They of course were closed today when I called.
However the pharmacy told me to call Humira and they were great to work with over the phone and are actually handling this all for me. They are contacting my insurance to find out what the deal is and getting me set up with whatever program I need to for assistance.
I'm just tired of feeling like crap and want to get started already in the hope of some relief.
However the pharmacy told me to call Humira and they were great to work with over the phone and are actually handling this all for me. They are contacting my insurance to find out what the deal is and getting me set up with whatever program I need to for assistance.
I'm just tired of feeling like crap and want to get started already in the hope of some relief.
Michelle that is awesome that the Humira people are gonna work it out with your insurance company and get you enrolled in the copay assistance...If all goes well, once you meet your deductible it should only be $5 a month. They have been helpful and understanding whenever I have had to talk to them, they always seem to genuinely care about Humira patients. Good luck, and I wouldn't be too worried about the tiredness, some people have it, definitely not all. I've personally never experienced it and I've been on Humira a few years now.
Michelle that is awesome that the Humira people are gonna work it out with your insurance company and get you enrolled in the copay assistance...If all goes well, once you meet your deductible it should only be $5 a month. They have been helpful and understanding whenever I have had to talk to them, they always seem to genuinely care about Humira patients. Good luck, and I wouldn't be too worried about the tiredness, some people have it, definitely not all. I've personally never experienced it and I've been on Humira a few years now.
I have talked with so many people at this point I can't keep it straight. Luckily I wrote everything down in a notebook! I too am finding humira people very helpful. My ins. co is telling humira that they do no cover the drug at all so humira referred me to their patient assistance program. My ins. co. is telling me that they will cover humira they just want to change to a different pharmacy (for a second time). My dr. office says they talked with someone at the 'new pharmacy' today and are showing we are approved and should be sent the meds within the week. I have know idea what's going on. lol.
How long have you been on humira? I've noticed that it seems more long term people are on remicade. Wondering if I made the right decision between the two at this point.
Michelle89,
Remicade has just been around longer. The medicine is similar to Humira in that it affects the immune system. I have been on Humira for 2+ years and it worked great initially. I think that it still works but on a certain aspect of the disease (couldn't tell you what). I plan on staying on Humira and I will also begin Imuran as well.
I think you made the right decision.
Remicade has just been around longer. The medicine is similar to Humira in that it affects the immune system. I have been on Humira for 2+ years and it worked great initially. I think that it still works but on a certain aspect of the disease (couldn't tell you what). I plan on staying on Humira and I will also begin Imuran as well.
I think you made the right decision.
- Joined
- Apr 15, 2012
- Messages
- 268
As posted previously, over the last 3 to 4 weeks the Humira has been working really well for me, at least until the last one or two days when I have been having some pain and problems again. But then I remembered that this also happened the last time my Humira *** was due. Seems like the injection is lasting just short of the 14 day injection period, then my symptoms start to bubble up again.
But now another spanner has been thrown into the works. I had blood taken last Friday, and unfortunately the lab and/or my GI stuffed up, and my GI didn't contact me till this Tuesday to say he hadn't received the results. The matter was resolved with a couple of phone calls, but the delay couldn't come at a worse time. The tests were for my 12 week assessment by Medicare where they look at my progress and decide if they will continue funding my injections.
Like all bureaucracy's they have strict limits on dates that reports have to be lodged, hoping that I don't miss their deadline. And until we get their reply, my GI is not allowed to write me another script for Humira ......
But now another spanner has been thrown into the works. I had blood taken last Friday, and unfortunately the lab and/or my GI stuffed up, and my GI didn't contact me till this Tuesday to say he hadn't received the results. The matter was resolved with a couple of phone calls, but the delay couldn't come at a worse time. The tests were for my 12 week assessment by Medicare where they look at my progress and decide if they will continue funding my injections.
Like all bureaucracy's they have strict limits on dates that reports have to be lodged, hoping that I don't miss their deadline. And until we get their reply, my GI is not allowed to write me another script for Humira ......
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- Joined
- Apr 15, 2012
- Messages
- 268
Worried I might lose funding for my Humira
AAAAGH!. :sign0085:
This is what I was afraid of! My GI called a little while ago to tell me that he has finally done the numbers for the Medicare report. He tells me that they are probably going to knock back any extension of my Humira treatment. When I questioned why, he replied that my ‘score’ has not improved enough!
The score he is talking about is the one that Medicare (Australia) use to determine how much improvement there has been in your condition after a period on Humira. To get approval for the Humira trial in the first place we had to do a score and my initial score came up at 380.
This is not unlike CDAI in that it takes into account things like number of bowel movements a day, number of irregular bowel movements, your weight versus your height, and various items from blood tests. My GI tells me that I don't weigh enough and the improvement in my blood test results is not sufficient to give me a score that will allow me to continue.
When I pressed him on what my score was, he said that it has come down from 380 to 179. The score that I would need to get to continue with Humira is 150 or less.
I pointed out to him that a reduction down to 179 represents a huge amount, especially given the fact that the Humira only started working for me three or four weeks ago. As far as I can see it seems that the longer I'm on Humira the better it is working, so it only makes sense that if I was on it a little longer I would get down under the 150 mark.
He said that he will call Medicare tomorrow and discuss with them. He tells me that Medicare enables a person to have two trials of the Humira, and after that they won't fund any more trials.
He suggests that I have surgery to remove the stricture and diseased with portion of my small bowel and then I apply again later if required to try the Humira again. But as I pointed out to him if I go off the Humira now there is no doubt that my symptoms and thus my score will go way up again. It would be crazy to let my score go back up to say 380 again and then take on another trial of Humira at a later date only to perhaps again only br withing my score down to 179 and again fail.
It makes sense to me that while I am down to 179, an extension of the Humira injections should get me down below 150 in a short time, and thus Medicare should be happy. Just the fact that I have been hungrier and eating more and putting on weight lately would indicate that my weight is going to go up more if I stay on the Humira longer, and going to go into reverse if I don't.
My GI said that he will talk to Medicare on the phone tomorrow and ask them if I can have my second Humira trial immediately. But he is not optimistic.
Have other people been through similar experiences? I'm sure there must be others out there. What strategies did you use to try and combat this stupid bureaucratic thinking? What are my options?
Desperate to stay on Humira and allow it to keep doing its good work!
Thanks for listening.
Gra
(Perth Australia)
AAAAGH!. :sign0085:
This is what I was afraid of! My GI called a little while ago to tell me that he has finally done the numbers for the Medicare report. He tells me that they are probably going to knock back any extension of my Humira treatment. When I questioned why, he replied that my ‘score’ has not improved enough!
The score he is talking about is the one that Medicare (Australia) use to determine how much improvement there has been in your condition after a period on Humira. To get approval for the Humira trial in the first place we had to do a score and my initial score came up at 380.
This is not unlike CDAI in that it takes into account things like number of bowel movements a day, number of irregular bowel movements, your weight versus your height, and various items from blood tests. My GI tells me that I don't weigh enough and the improvement in my blood test results is not sufficient to give me a score that will allow me to continue.
When I pressed him on what my score was, he said that it has come down from 380 to 179. The score that I would need to get to continue with Humira is 150 or less.
I pointed out to him that a reduction down to 179 represents a huge amount, especially given the fact that the Humira only started working for me three or four weeks ago. As far as I can see it seems that the longer I'm on Humira the better it is working, so it only makes sense that if I was on it a little longer I would get down under the 150 mark.
He said that he will call Medicare tomorrow and discuss with them. He tells me that Medicare enables a person to have two trials of the Humira, and after that they won't fund any more trials.
He suggests that I have surgery to remove the stricture and diseased with portion of my small bowel and then I apply again later if required to try the Humira again. But as I pointed out to him if I go off the Humira now there is no doubt that my symptoms and thus my score will go way up again. It would be crazy to let my score go back up to say 380 again and then take on another trial of Humira at a later date only to perhaps again only br withing my score down to 179 and again fail.
It makes sense to me that while I am down to 179, an extension of the Humira injections should get me down below 150 in a short time, and thus Medicare should be happy. Just the fact that I have been hungrier and eating more and putting on weight lately would indicate that my weight is going to go up more if I stay on the Humira longer, and going to go into reverse if I don't.
My GI said that he will talk to Medicare on the phone tomorrow and ask them if I can have my second Humira trial immediately. But he is not optimistic.
Have other people been through similar experiences? I'm sure there must be others out there. What strategies did you use to try and combat this stupid bureaucratic thinking? What are my options?
Desperate to stay on Humira and allow it to keep doing its good work!
Thanks for listening.
Gra
(Perth Australia)
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I've been on Humira 2 years and it really has been smooth sailing. And there have definitely been people on it for a very long time, I remember someone once posted that her husband had been on it 8 years! I guess you just go with it as long as you can. And if it doesn't work out, you can always try Remicade next.
And seriously good luck with the whole crazy insurance thing! What a mess :ybatty:
- Joined
- Oct 20, 2012
- Messages
- 35
OK what all did everyone on Humira have to do to prepare for it, GI told me today that he is starting me on Humira but I had to go get flu shot, get blood work done, I have to have a eye exam, and have to make sure my immunizations are up to date. Plus I have to have a GYN appt.
I had to have a TB test prior to starting Humira. In hindsight, I should have had a Hep A and B vaccination as well.
I haven't started Humira yet because of insurance issues, but I had do some bloodwork/TB and urine sample. Was never told anything about vaccines (flu, hep A, or B)??? why would those be important?
Being military, already had Hep A and B, but they did the TB test and some other blood work to check for infection. I had to get the pneumonia vaccine as well as my annual flu shot, but not the nasal one, since it's live. I guess it's definitely better to be safe then risk getting a really bad infection due to a compromised immune system. Felt like a pin cushion for a while
I am curious about this as well... I work in the medical field and need the Hep b vaccine and also need to start Humira. Do I need the vaccine and then wait to start Humira or can I get the vaccine after starting?
My doc says the main difference between Humira and Remicade is that Humira is a "cleaner" drug. More human properties to it than Remicade... You know docs though, but that's what he said
- Joined
- Apr 15, 2012
- Messages
- 268
My understanding is that rats are involved in the manufacture of remicade, but humira is somehow based only on human sources (?) Maybe someone else can clarify....
2
As Gra said, Remicade uses mouse proteins in the making of it which concerns me and humira is more....not sure "natural" is the word I'm looking for lol. I don't think any of us would choose either of these drugs if we didn't have to. I chose Humira for that reason though - no mouse proteins. Figure I can still go to Remicade if Humira doesn't work at some point.
Unfortunately my insurance may make that decision for me.......
